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Casting a finer net: involving fishing communities in HIV research

Fishing communities in Uganda are taking part in HIV research activities that help strengthen communication about HIV prevention and treatment, and provide important lessons to researchers.

William Kidega, of UVRI-IAVI HIV Vaccine Program, tells the story.
More than one million people live in the fishing communities scattered along the shores and islands of Lake Victoria. Due to their geographic isolation, low literacy levels, high mobility, general attitudes towards risk, and the near absence of a wide range of basic health services, these people are vulnerable to a variety of infectious diseases. As might be expected, they have been hit especially hard by the HIV epidemic. Early data emerging from an ongoing study conducted by the Uganda Virus Research Institute (UVRI) and funded by the European and Developing Countries Clinical Trials Partnership (EDCTP) reveal that 27.5 per cent of the population is living with HIV, compared to a national average of 6.4 per cent. Even more disturbing, incidence data which reflect on whether prevention strategies are successful in reducing the number of new infections, reveal that the fishing communities are becoming infected at a much higher rate than the general population.

UVRI has been actively engaged in research on HIV and HIV prevention for the past two decades. Its experience has underscored the importance of engaging those at highest risk of HIV infection in prevention research and treatment programmes. The people of Uganda’s Great Lakes region certainly fit that bill.

So, with funding from the Wellcome Trust UK, a UVRI team is working with the International AIDS Vaccine Initiative (IAVI), and in conjunction with the EDCTP-funded research, to field test a number of novel community engagement approaches to distribute information on HIV and sustain the interest of Lake Victoria fishing communities in HIV prevention research. This work is of particular importance to long-term HIV prevention research, especially the large scale clinical trials necessary for AIDS vaccine development.

Effective communication is obviously critical to community engagement. To help devise a successful communication strategy, the team first systematically analysed the social and behavioural patterns of the fishing communities and prevailing awareness about HIV. These studies revealed, among other things, that most people in the communities surveyed are unaware of existing HIV prevention options and, in any case, have very limited access to them. The research also suggested a handful of potentially effective communication strategies. In particular, the team concluded that it should harness sporting events (football, pool/billiard games and boat races) and other entertainment—such as music, dance and drama—to communicate HIV information and introduce communities to prevention research. In addition, the team decided to use community dialogues and information seminars to help spread the word about prevention research and ensure the accuracy of the message.

These strategies are all now being used to reach boat builders, fishermen, sex workers, community leaders, beach management units, and restaurant and lodge workers across the area. The turnout at such events has generally been overwhelming, with most people staying from start to finish, providing many opportunities to share information on HIV prevention and related research.

The team has also worked to develop communication processes that are relevant and responsive to community needs, and deployed them to educate people about available methods of HIV prevention: abstinence, effective condom use, monogamy or faithfulness, and medical male circumcision. It has, for instance, conveyed the importance of voluntary HIV counselling and testing as an entry point to prevention through the performance of songs and poems composed by artists within the community. These messages are also integrated into commentaries during sponsored soccer matches and during interludes at other sporting events.

Benefits to researchers

Team members have also learned that the information seminars and community dialogues benefit not just the community, but the researchers as well. These events give researchers a better understanding of the prevailing myths and misconceptions about HIV and HIV research, and a clearer sense of the factors that affect the health of people living in fishing communities. This understanding is critical to their ability to address community expectations and needs in the conduct of their research.

The team has learned, for example, that most fishing communities perceive themselves to be at higher risk of death from accidents such as drowning, than from HIV. This perception contributes directly to high-risk behaviour. Conversely, given the prevalence of HIV infection, some community members simply assume that they are living with HIV —and may dispute the accuracy of test results that turn out HIV negative. For the study team, this enhanced understanding of factors influencing behaviour, attitudes and practices has been critical to the successful conduct of HIV education, the substance of HIV prevention messages and the design of HIV research.

The team has also found that its understanding of the social and behavioural characteristics of fishing communities has played a vital role in developing effective strategies for sustaining public interest in HIV prevention and research activities. It has found, for example, that conventional modes of information delivery—such as posters, brochures or flyers—tend to be ignored. HIV prevention messages, it turns out, are best delivered in relaxed settings and in entertaining ways.

The initiative has also shed light on the expectations and needs that are likely to feed into any HIV research conducted in fishing communities. Such work cannot be efficiently conducted without ensuring access to basic health and HIV services for the community: marginalised communities asked to participate in such research often ask, “What is in it for us?” By establishing strategic partnerships with health care service providers, the team has supported the provision of such basic services and that has widened the reach of HIV prevention messages and the acceptance of HIV prevention research.

Finally, understanding the leadership hierarchy within communities is critical to the success of both public health education and HIV research efforts. Outreach teams working in such communities must recognise the importance of engaging local leaders and resource persons as entry points for outreach activities. They can play a vital role in community mobilisation and do much to ensure sustained community support. We credit the positive outcomes of our initiative in large part to the active support and ready cooperation of such people.